Someone close to you has dementia. Welcome to the club.

When you mention that someone has dementia, the first assumption people generally have is that it is Alzheimer’s disease. However, there are several possibilities as to what type of dementia a person has. Not all are easy to diagnose or differentiate. This leaves us all with some confusion when trying to understand or even talk about what is going on.

Dementia: Is It Alzheimer’s?

To date, Alzheimer’s can only be diagnosed with certainty after death by examination of the brain. However, there are certain ways symptoms progress that lead physicians to conclude a person most likely has Alzheimer’s disease. Hence, the informal diagnosis of Alzheimer’s in someone still alive.

There is much current research with the goal of being able to diagnose Alzheimer’s while a person is still alive. Our population is aging fast and cases of dementia are on the rise. Therefore, such a discovery is high on the list of priorities in medical research. Until that discovery happens, what do we know?

Note: Someone can have some of the symptoms of dementia due to other disorders, such as substance abuse or major depression. However, here I would just like to focus on dementia independent of other “temporary” causes.

Differences in Symptoms Per Type of Dementia

Again, per the Mayo Clinic, the following progression of symptoms help determine what type of dementia a person has. Clearly, there is a lot of overlap.

Vascular Dementia: Onset is abrupt, caused by a large stroke or a series of smaller strokes. In comparison to Alzheimer’s, memory loss is generally milder and physical disability is worse. Repeated strokes cause additional brain damage.

Frontotemporal Dementia: Personality and behavior problems are usually the first symptoms to appear. Memory loss happens later. Usually occurs age 40 to 70. (The December 2017/January 2018 edition of AARP magazine describes this disorder. Read this very sad article, “What Happened to My Husband?”)

Dementia with Lewy Bodies: Concentration problems and disorientation are usually the first symptoms. Visual hallucinations are common. Active symptoms can alternate with periods of apparent normalcy. Stiffness, tremors, and slowed movement may develop.

Mixed Dementia: A triple whammy of the symptoms of Alzheimer’s, vascular dementia, and dementia with Lewy bodies.

Additional Causes of Dementia

Huntington’s Disease: Severe decline in thinking is the hallmark symptom. Age 30-40

Parkinson’s Dementia: Symptoms mimic dementia with Lewy bodies. However, the problems with body movement begin a year or more before there are cognitive difficulties.

Traumatic brain injury: Signs are memory loss, depression, explosiveness, impaired speech, and slow movement. Symptoms can show up years after the trauma.

Primary progressive asphasia: Impaired speaking and language are the primary symptoms. Short term memory is usually not affected. Age 50-70.

Further Complications

To make things even more complicated, symptoms of Alzheimer’s or dementia with Lewy bodies, for example, can be accelerated by eventual strokes in the elderly.

Also, there are ways dementia can be brought on that affect the progression of symptoms. For example, a medical emergency can abruptly bring on symptoms, effectively skipping the early stages of dementia.

The Stages of Alzheimer’s Disease

Because Alzheimer’s is the predominant label we hear, it may be helpful to know how the National Institute on Aging (NIA) describes the stages of Alzheimer’s. (See “Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide from the National Institute on Aging.”)

Mild: There is some memory loss, and small changes in personality. The person may not be able to solve simple math problems or may lose the ability to plan and organize. For example, making a grocery list and then being able to find the items in the store may become impossible.

Moderate: At this stage, there is more obvious memory loss and confusion, more trouble organizing, planning, and following instructions. The person may need help getting dressed, start having problems with incontinence, and have trouble recognizing family members and friends. They may not know where they are or what day or year it is, become restless, and begin to wander. Repeating movements late in the day and having trouble sleeping are common. More serious personality changes may include making threats, accusing others of stealing, becoming physically aggressive, cursing, screaming, or grabbing things.

Severe: The person needs help with all daily needs. They may not be able to walk or sit up unassisted, not be able to talk, and often cannot recognize family members. They may have trouble swallowing and even refuse to eat.

The NIA describes these stages as Mild, Moderate, and Severe. However, you could also describe them chronologically as Beginning, Middle, and End stages.

So, What Type of Dementia Is It?

Yes, it might be Alzheimer’s, but it also could be one of the other types of dementia listed above. Yet again, it could be dementia of a type and due to causes that we just don’t know about yet. We are living longer now. It is not strange that our brains, as well as other parts of our bodies, are showing wear in new and sometimes inexplicable ways.

Grief After the Death

Reactions and Assumptions

Since my mother died in September, I’ve noticed an interesting response from some people. It’s almost as if because my mother was elderly—just shy of her 93rd birthday—that her death is easily dismissed and somehow doesn’t warrant grief. “Well, she had a good long life.” The subtle message is “Don’t be sad.”

Additionally, because most people know my mom suffered from dementia over the last four years of her life, there is also an element of how relieved I must be not to have to take care of her anymore.

Reality

Well, for one thing, I wasn’t taking care of her. Mom was in an excellent care home four minutes from my home and only near me for the final ten months of her life. With the exception of six days when I was out of town and two days when I was sick, I visited her every day during that time. That was my choice. It wasn’t a burden. I only had to take her to medical appointments (admittedly not an easy task) and make decisions in consultation with the very capable staff of her care home. I was not her caregiver.

So the assumption that it is a major relief for me that my mother is dead is not at all true. As for the assumption that she had a “good long life,” I’m not so sure about that. A long life? Yes. A good life? I really don’t know how she would assess her life. From my point of view, she was unhappy for most of her adult life. That makes me very sad. I deeply hope she viewed it differently when she was still capable of remembering it.

Caregivers’ Grief

Listening to actual caregivers who are grieving a loss, I don’t hear any profound relief that they are no longer on call 24/7 and can rest now, make plans, go places, and “have a life.” They are mourning all those years that their loved one was dependent upon them instead of being an active spouse, parent, sibling, or child. They are mourning the loss of function whether it was physical, cognitive, or both on behalf of the loved one and also for themselves in relationship to their loved one. And now, for the most part, they are alone and deeply grieving.

Complicated Grief

We are going to grieve so many things when someone dies. We grieve that person, but there is so much more to grieve than just the disappearance of a particular person from our lives.

We grieve the loss of a good relationship, or perhaps we grieve that the relationship wasn’t what we hoped it would be.

We may mourn that the lifetime of our loved one may have been a disappointment to them, unhappy overall, or beset with misfortune.

We may mourn how that person negatively affected our own life. Life and relationships are complicated.

And, unfortunately, every death brings up the death of anyone else important to us, turning the current grief into layers of grief. It can be overwhelming.

Oh, and then there’s that pesky reminder of our own mortality and vulnerability because we know there are other people in our lives who we could lose at any time.

Responses to Grief

So, to state the obvious (which somehow does not seem to be obvious to everyone), death is always a blow. Don’t try to make it not a blow for someone else. Statements, such as They are in a better place, or At least they are not suffering anymore, or They had a good long life, or Well, now you can get on with your life are not at all consoling. In fact, just the opposite. These statements come across as dismissive and minimizing at best.

What is helpful are comments such as:It’s always hard to lose a parent no matter how old they are.I haven’t lost a spouse (or a sibling or a child or a friend). I can only guess what you must be going through.I’d like to have you over for a cup of coffee or tea.
And the ever safe I’m so sorry for your loss.

To read other related posts, click here for Dementa and Grief, Part I (Pre-Death), click here for Happy Birthday to You: Birth and Death, and click here for Guilt in Caregivers.

Dementia and Pre-death Grief

When a loved one has dementia, grief starts long before death. It seems that you lose that person bit by bit as memory is lost bit by bit. Every step down that road is a loss. They are not the same person. If it’s a parent, first, they don’t remember your adulthood. Next, your childhood is forgotten. Then, they might not remember you at all. If it’s a spouse, a sibling, or a friend, your entire relationship may end up forgotten.

What Exactly Is Lost?

When my mother was hospitalized after her accident, it took us a while to discover how much of her memory was lost. She was disoriented, delusional, and hallucinating in the hospital. It was clear she didn’t know how to eat. It was also clear that she didn’t remember she was too weak to stand because she kept trying to get out of her hospital bed.

Somewhere along the way, as Mom stabilized and started to heal, we realized she had lost ten years, including the eight years she lived with my sister and brother-in-law. Because that was not an easy time for my sister, the fact that Mom couldn’t even remember it was a big blow.

Through conversations over the next month or so, we discovered that Mom didn’t remember at least the past thirty years. Putting it into selfish terms, that is over thirty years of your life that your parent doesn’t remember. Given that I was sixty-one at the time, that was at least half my life, almost all of my daughter and son’s lives, and all of my two grandson’s lives. Wiped out.

I became afraid to ask what, if anything, Mom remembered before that. I still don’t know if she remembered anything of our childhood. There were very important life events in her adult life and in ours that I never had the courage to ask about. I didn’t want to distress her. I didn’t want to distress myself. We just lived largely in the moment and in her memories of her own childhood.

Extended Grief

So, depending on how fast the dementia progresses, there’s months or years of loss and grief before death. With a physical decline, a person is for the most part still there, still present. With dementia, the brain—that which makes a person that person—is progressively lost. It’s a very strange disease, distressing and confusing for the patient, frightening and full of grief for the helpless family. It is different from anticipatory grief. It is active prolonged grief.

If someone you know or love has a hard time living their day-to-day life on their own, chances are someone else close to them has taken it upon themselves to be their caregiver or caretaker. Caregiving is a time-consuming endeavor where you have to be available at any time, day or night. The emotional stress of caregiving can also be difficult. Watching someone you love struggle with daily activities and declining health can take its toll.

This holiday season, treat a caregiver with a thoughtful gift that encourages them to take time for self-care. Self-care is any act done deliberately to help one’s health mentally, physically, and emotionally. These acts refuel us, and they are generally something that we enjoy. It can be as simple as drawing a hot bath or watching a favorite movie. However, self-care can also be the things we don’t necessarily enjoy, like taking time off to go to the dentist. Self-care is about preserving yourself and making your health a priority in a society where we are often pulled in so many different directions.

When it comes to self-care gift giving, it is best to focus on the “enjoyment” activities. While much of what we do for self-care involves things, the gift shouldn’t be about the item itself. It should be about the experience the item facilitates.

Here are some of our favorite ideas for self-caring gifts for the caretakers in your life:

A Blank Journal

The gift of a blank journal is the gift of self-expression. Taking the time out every day to write a little something is very cathartic, especially for someone going through a lot like a caregiver is. Journaling doesn’t have to be writing long-winded entries detailing every hour of every day. Micro-journaling is a new way to take up the hobby without having to put too much pressure on oneself to pump out perfect prose every evening.

Micro-journaling requires the journaler to do four simple things:

1. Write the date.
2. Make a list of 10 things about your day.
3. Identify one thing you are grateful for.
4. Go back to living your life!

It’s simple, elegant, and allows a person to express themselves and release their thoughts and feelings in a healthy way.

Dark Chocolate

Food is a great gift. Everyone has to eat, but not everything we eat is going to be special. Dark chocolate is the perfect gift for everyone, even someone who “has everything,” and can buy themselves whatever they want, whenever they want. But of all the foods, why do we suggest dark chocolate as a self-caring gift?

Dark chocolate tastes decadent, so when we enjoy it, we are giving ourselves a treat and a break from the realities of the day. However, dark chocolate has a lot of health benefits, as well. It is full of minerals and antioxidants, and eating chocolate releases serotonin and endorphins into the brain, also known as the “feel good” chemicals in our body.

Adult Coloring Book and Crayons

Coloring helps promote mindfulness and reduces anxiety, so it has become very popular among stressed out grown-ups. The adult coloring book craze taps into our love of being creative as well as zoning out. Buzzfeed has a wonderful list of great coloring books for adults, but you can also find some that specifically cater to your caregiver’s interests.

Summing Up

If you are looking to buy a gift for a person who has taken on the role of caregiving for a senior or ailing family member, treat them to a gift that helps them be active in their own self-care. A blank journal gives them space to express themselves verbally and chronicle the things they are grateful for. Dark chocolate is the gift for those who seemingly have everything. It’s delicious and secretly good for the body, as well. Finally, adult coloring books are perfect for those who want an activity that promotes mindfulness and reduces anxiety. You can feel good giving any of these gifts to someone who works so hard–a nice little feel-good bonus for you, as well.

I had a span of four days two months ago when I went to the E.R. three times—twice for my mother and once for my husband. Going to the E.R. is never fun. Even if you have all your faculties it can bring out negative reactions and behaviors. Being in pain may cause one to really despise the wise-cracking nurse who otherwise would be fun to be around. The unpleasantness of being in that cold and stark environment, being left waiting for hours, and wondering what the heck is wrong with you just doesn’t make for a pleasant time.

When one is in the E.R. and has dementia, it is a bit different for both the patient and for the caregiver.

E.R. Staff Will Drive You Mad

Intake staff will persist in directing their questions to the patient. As the person accompanying a loved one with dementia, it gets really old having every single person ask “When is your birthday?” “Where were you born?” “What is your height?” Mom just looked at me mystified and concerned. I had to keep explaining that she doesn’t know that stuff on any day. It in no way reflected effects of the “seizure” which sent us to the E.R.

You might think, why didn’t you explain about the dementia. I did, but it didn’t change anything. I even came armed with a list of her diagnoses and of all her medications. The intake people took it, and it was never seen again. It did not travel with her to her cubicle in the E.R. or upstairs when she was eventually admitted to the hospital. None of the information was put in her chart or on the computer. I was left doing the best I could from memory. So annoying when you feel you really came prepared and organized. My advice is carry 3-4 copies, not just one.

The E.R. Is Not Dementia-Friendly

Once we navigated the intake questions and were finally seen by a doctor, the tests began. The lab work went okay, but the x-ray experience was special as in not-in-a-good-way special. Mom needed an x-ray of her heart. According to the technician, the doctors don’t want the patient to lie down while the x-ray is taken. The technician and I did our best to make this easy for Mom. However, since she is little, her wheelchair was too small to accommodate placing the plate behind her. The technician decided Mom would simply get out of her wheelchair and sit on a stool in spite of my expressed opinion that this was going to be difficult. Yep. Even once we managed the transfer, Mom kept listing to port, in danger of falling off. Mom gets really scared if she thinks she is going to fall. Sitting on something with no back and no sides was very scary for her. I was saddled with one of those heavy protective aprons as I tried hard to hold her up straight enough to get a good picture. We really needed a third person to help us with her. It was ridiculous. It took forever. Tell the damn doctors we can’t safely do it.

The IV was a disaster. Mom had been moving her hands almost constantly during her waking moments for several months as part of her agitation. Was she going to leave this thing alone that she could feel in her arm? No. I first discovered she had knocked it out when the monitor quit showing her pulse. As I was trying to put the little device back on her finger, I lifted her blanket, and noticed her gown was bloody. I called the nurse who ignored my efforts to tell her Mom couldn’t help it and lectured Mom on not touching the IV area. Oh, and also please leave your arm extended so that the blood pressure cuff works properly, thank you very much. The nurse decided that maybe the IV needed to be better wrapped to protect it and Mom. You think? Mom pulled it out a second time. No blood this time, just the IV spilling out and soaking her. Another change of gown. This time a different nurse came and had the sense to put it in her hand which at least made it easier for me to see what Mom was doing. I just held her hands. We eventually gave up on the pulse device altogether. It was no sooner put back on Mom’s finger than she had it off again.

Tiny Dancer

When the doctors finally decided to admit Mom during our second trip to the E.R., there was more fun. Again the repeated useless questions, the repeated physical tests for stroke. At one point, after we had been there about six hours already, the admissions doctor came to see Mom and put her through her paces again. When he asked her to raise her arms, she started waving her arms around with delicate hand gestures and a childish look on her face. I looked down at her and said sternly, “This is not ballet class.” I know, it was mean, but I’d been up all night the night before with my husband. I was ready to drop, and those metal chairs are not comfortable. I actually climbed up on the foot of her bed at one point to lie down for a while.

Escaping the E.R.

I didn’t need a doctor or an x-ray or an MRI to tell me. I knew Mom had suffered a stroke. So many of the signs were there—the typical one side weaker than the other, the change in her vocabulary (The stethoscope was “icky,” “felt all messy” rather than cold.), decreased comprehension, the above-mentioned childish behavior, and the clincher–the fact that she never complained during the entire seven and a half hours we were there, never asked when we were going home, never muttered under her breath. That was definitely atypical. Mom just stared up at the ceiling. She was delighted to get into the hospital inpatient room with warm blankets. I had to answer all the same questions all over again, but got out of there by 11:40 and was home shortly after midnight.

And that was the beginning of the seven-day hospital stay. More about that experience and how to advocate for someone who cannot speak for themselves later.

For other posts that also deal with loved ones in the hospital, click here for Irrational Desires and Hospital Nightmares; click here for Dealing with Delusions and Memory Loss; click here for Inconsistent Memory vs. Nightly Rituals; and click here for Meeting Financial Challenges

Five days after I wrote my last post, which was dated August 15, 2017, my mother had a stroke. I was with her in the hospital and then back in her care home with hospice care until she died on September 9th.

Is someone with dementia able to socialize with new acquaintances, or is socialization limited to family, known for a long time, and interactions with staff, vital to survival?

A Great Setup for Socialization

Because Mom is in a care home, I thought she would enjoy socializing with the other five residents as well as with the staff. I couldn’t have been more naive. Mom has been in her care home for almost nine months. She still doesn’t even know the names of the other residents let alone displays enough interest in them to talk to them. I find this loss of socialization and the state of isolation it brings very sad and incomprehensible.

Lost Opportunities for Socialization

Mom has at least formed a good opinion of one of the other residents. “He’s such a nice man,” she will say of one of the two male residents. It is the only positive statement she has made about any of the residents. The other male resident is bedridden, so it is not surprising that Mom doesn’t know who belongs to what is merely a voice down the hall.

There are three other female residents, as well. All the four women spend each and every day in the living room together, sitting in the same chairs, each covered by a blanket. Mom is aware of only one of them.

No one can fail to notice Betty. Betty is the source of drama at Mom’s care home. Betty goes on a jag about every three months and gets nasty and rebellious, refusing to eat or take her medications. Her appalling behavior, including stomping out of the front door with her walker and screaming for the police and berating the mail carrier, inevitably escalates to a call to the police and the ensuing 72-hour hold at the hospital.

Betty is equal opportunity mean. She distresses the staff as well as the other residents and any unsuspecting visitors.

Mom doesn’t like her. Betty targets Mom because Mom gets visitors, otherwise known as me, whereas Betty’s children refuse to have anything to do with her for some unfathomable reason. I have arrived and been told that Mom has been crying because Betty was being a harridan again.

Because Betty makes life miserable for everyone, staff has been trying move her elsewhere, preferably to some gulag in Siberia. So far, no cigar, not even poor quality vodka.

Then there is Sarah. Sarah is a very sweet, gentle lady. Mom’s awareness of Sarah is limited to the following:
Sarah sneezes.
“Bless you,” I respond.
Mom asks (every single time), “Who are you talking to?”
“To Sarah. She sneezed.”
Mom peers over the great expanse of approximate five feet that separates her from Sarah as if she never knew someone else was there. This is in spite of the fact that any time Sarah is taken to the bathroom or to her room for an after lunch nap, Sarah passes within inches of Mom’s feet. And yet somehow, Sarah does not exist for Mom.

The final resident is Grace. Mom completely ignores Grace when Grace starts talking. Admittedly much of the time, Grace is talking in her sleep. Grace sleeps much of the afternoon due to age and medication. When she is awake and moving, Mom will come up with some truly stellar questions and remarks.
“Is that a real person?” Mom asks.
“Yes, Mom.” (You’ve got to be kidding me. Really? No, Mom. that is really an artificial intelligence creature placed there to take up space.) That’s Grace. She was taking a nap.” (I may think exasperated and snotty, but I somehow never express it in the moment. I am a coward.)
Mom then launches into one of her soto voice tirades. I can only get the gist of her disapproval that someone dares to be sleeping out in the living room all afternoon long. I guess when Mom falls asleep, time just stands still, and it does not violate the strict manners of a proper lady.

Socialization with the Staff

Mom does much better with the staff. No, she still can’t remember any names, not even Anne’s who is there five or six days a week. However, Mom banters and jokes with the staff, if by joking we include threats to kick them in response to their reminder to keep her feet and arms in so as not to get hurt while being wheeled to and from the bathroom. They act as if she is funny whereas my eyes get wide, and I want to apologize.

I guess they are accustomed to her aggressive/critical ‘humor.’ I remember Anne’s story about lunch being delayed for some reason while all the residents were waiting at the table. She related how she told them, “Sorry we are running a little late. Lunch is coming.” Mom replied, “So is Christmas.” Ha! ha! ha!

I don’t find it funny. I find it rude and critical, but then I grew up with Mom, and Anne didn’t. Anne thinks it indicates that Mom is still sharp in some ways. Right. Sharp as a knife shoved in your gut and then twisted. But, we all have a different perspective, and I am truly grateful that the staff seems to find her amusing rather than acerbic. However, If Betty ever does get shipped out, Mom may be in trouble.

Socialization Conclusion

So, the answer to my question is that, in my mother’s case, she is not able to socialize other than with me, with my husband, and with my sister when she visited, and with the staff. She is unable to reach out to the residents around her. They serve no purpose for her, and that I find very sad.

Recently Mom has exhibited increased agitation and anxiety especially at night. When symptoms increase at the end of the day, doctors refer to it as sundowning.

Mom’s Symptoms of Sundowning

Previously, Mom went to bed around 6:00 and slept through the night. Now instead, she talked to herself until 10:00, repeatedly wadded up her blankets, called for staff several times during the night, maneuvered herself sideways in the bed or scooted up against the headboard until her neck was cranked. Overnight staff repeatedly repositioned her and settled her. For the first time, she fell out of bed. The second time it happened, it became clear she was trying to get out of bed, forgetting that she couldn’t stand or walk.

I consulted with Mom’s doctor who prescribed a sedative commonly used for sundowning in dementia. It would calm Mom and make her sleepy, theoretically anyway.

The Effects of Sundowning During the Day

All this activity during the night naturally resulted in increased napping during the day.

My visits with Mom deteriorated to five or ten minutes of conversation at some point in the two-hour visit, or none at all. The rest of the time, she was deeply asleep. Occasionally, she talked to herself in her sleep. The snippets I could hear over the tv music channel were “She didn’t have that on her,” an annoyed “Don’t look at us” as if she was talking to staff, and a complaining “She comes in and sits down and gets up and leaves.” I wondered if she was referring to me.

A Related Complication

A few days during that three-week period Mom was actually awake and alert. It was then, I discovered that even during the day she no longer understood that she couldn’t stand or walk. During my visit, she tried to get out of her recliner three times. I watched her scoot herself forward until stymied by the challenge of the footrest.

“Do you need something, Mom?” I asked.

“Oh, I was just wondering what we have for dinner.”

Since that was my first experience of Mom attempting to get up, I thought it was an aberration and joked, “Oh, a little bit of this added to a little of that.”

She laughed and sat back.

The second attempt came about twenty minutes later.

“Do you need to go to the bathroom, Mom?”

“I thought I’d turn the oven on.”

Okay, so now I understood she was truly concerned about dinner and thought it was her responsibility to provide it. So this time I answered her seriously.

“I think Alice is getting dinner, Mom.”

“But does she have enough for . . .” Mom gestured around the living room where three of the other residents were sitting. “ . . . all of us?”

“Yes, she is cooking dinner especially for all of you.”

“Oh. Well, that’s nice of her.”

I thought I would put her mind further at rest by actually going to the kitchen. I told Alice that Mom was trying to get up to help with dinner, and that I was just trying to settle her mind by checking on it. Then I returned to the living room with the affirmation that indeed Alice was making dinner and all was under control.

Less than ten minutes later, Mom made her third attempt. What now, I wondered?

“What are you trying to do, Mom?”

“I thought I’d set the table.”

Oh, great. “It’s too early Mom. It’s only 2:20. It’s more than an hour and a half before dinner.”

Before I left, I let Cassie also know that Mom was trying to get up. Cassie promised to keep an eye on her.

Ready for Another Solution

At the end of the three-week trial, we all agreed the sedative was not working, and I sent an email to her doctor with the report, which was basically “no improvement.”

The doctor has other possible solutions. I just hope we don’t have to go through too many before finding one that helps. I miss being able to spend time with my mother awake.

Over the past three years and nine months, my mother has had a few paranoid delusions. This is common in people with dementia, but I wondered what caused it.

Mom’s Paranoid Delusions

When Mom was in the hospital after her accident, she was very frightened by the hospital staff. The first time staff moved her from her bed to a chair so that she could eat dinner and they could change her bedding, she thought that the chair would tip her down a chute to the basement where she would be murdered. She begged me not to leave her alone “with these people.”

Mom has an intermittent delusion that the TV is a window through which people stare at her. This paranoid delusion also first appeared the night I spent with her at the hospital. It resurfaced when we moved her to a care home where she was exposed to daily TV after almost three years of not ever watching it. She frequently asked me why “those people” were staring in at her. How rude! Mom got very agitated. She even worried about me when I left because “those people” were still outside. Although Mom has largely adjusted to the concept of TV, she will still at times express irritation that the people on TV are staring at her.

My mother also thought that my husband and I were going to kill her. That was a fun one. One day when we were returning Mom to her care home after a visit with us, I overheard her muttering in the car, “These two people coming to get me, coming to kill me.” Now, if I had heard this during the 7 1/2 hour trip bringing her down from Livermore, I would have disputed it as a delusion because we really were just about ready to kill her. It’s not paranoia if it’s true, right? However, by this point we were long over our stress and not about to do her in. Yet at least briefly, my mother viewed us as strangers who planned to kill her.

What is it about dementia that dredges up the primal fear that others have ill intent and even mean to kill you?

Why Do Dementia and Paranoid Delusions Coexist?

Mom’s main caregiver told me that almost all of the residents with dementia in their four homes are on or have been on anti-anxiety meds. I can understand that. When you don’t know where you are or what happened 15 minutes ago, when you don’t remember you have a bedroom, when you are totally dependent on others, of course that is going to produce anxiety.

Are the paranoid delusions the extreme product of this anxiety? Are people who have suffered from anxiety prior to dementia more apt to have paranoid delusions?

I was very curious to know and started reading articles on dementia and paranoid delusions.

Dementia and Paranoia

I found many articles about how to cope with paranoid delusions in dementia patients, but little about what caused it. In the article “Understanding Paranoia and Delusions and Some Coping Strategies,” The Alzheimer Society in Cornwall, Ontario, Canada states “that the person with dementia often feels that they have little control over their life and little insight into what is happening around them. It is often easier to blame someone else such as the caregiver for events that they do not understand.”*

Blame didn’t really seem to me to be the problem, except in regard to missing objects. Fear did.

The article went on to attribute paranoia to misinterpretations of what the dementia sufferer sees and hears due to memory loss and visual spatial problems. Basically, “changes in the brain” was the cause.*

Well, yeah, but I still wanted to know why exactly cognitive dysfunction led to fear. I got nowhere.

Walk in Their Shoes

In one or two posts I have likened an adult with dementia to a toddler. The need for reassurance, explanations, help with communication, and care-taking are the same.

Maybe you don’t remember what it was like being a young child. There was a lot of fear—fear of loud noises, of the dark, of being alone, of strangers, of dogs. The thin line between reality and fantasy led to fear of monsters under the bed, unknown terror in the hallway, and a host of other threats. And you knew instinctively that you were powerless and defenseless.

So consider people with dementia. They don’t know where they are or who they are with. Even if they have a roommate, they forget that they do and feel alone at night. Loud or “strange” noises (the dishwasher, the vacuum cleaner, staff clattering in the kitchen) cause them to startle. They can’t remember the other residents. The staff is more recognizable, but not completely, especially if it rotates. Who is this person dressing me, taking me to the bathroom, bathing me? Do I have a home? Where is my home? How long will I be here? Am I sleeping here tonight? Do they have a bathroom here?

Shake in Their Shoes

All this not knowing is frightening. I think people with dementia have the fears of a young child, but lack the remedy of climbing onto Mother’s lap for protection or having Dad show them there is no monster under the bed and then leaving a nightlight on and the door open.

The next time a child hears the vacuum cleaner, he can remember that Mom explained she uses it to clean. The noise still startles him, and he doesn’t like it, but at least he learns what it is. My mom asks me every single day what the noise is when the dishwasher is going or staff is preparing a meal. She does not remember. She does not learn.

You have to have memory to learn.

If a noise is that concerning, imagine how it is when you can’t learn where you are or who is there with you, or if anyone is there with you. It is like waking up with amnesia every moment of your life. Amnesia and something akin to paralysis if you are no longer ambulatory. You are completely vulnerable–powerless and defenseless. You can’t even run away.

It might make an interesting movie, but it is a hell of a life to be living. No wonder they are afraid and expecting danger everywhere.

*Note: (To read the entire article, click here to reach The Alzheimer Society and then search for ‘Paranoia and Delusions.’)

Related Posts

My post “Inconsistent Memory vs. Nightly Rituals” describes the frustration of trying to orient someone with dementia to their environment. It also expands on the TV delusion. To read it, click here.
For a look at the scary delusions and hallucinations someone can have at a hospital, click here to read “Irrational Desires and Hospital Nightmares.”
“Mom Stopped Peeing on Me. Thanks, Care Home” describes how I dealt with Mom’s delusion that I was going to kill her. Click here to read that post.
To understand why I felt on the verge of throttling Mom, click here to read “Meeting Financial Challenges,” especially the section regarding the trip.Click here to read “Dealing with Delusions and Memory Loss” for more about delusions.

“Grace” is one of my favorite residents at Mom’s care home. Her dementia is advanced. She doesn’t say a lot, but generally conveys that “It’s good.” She likes the home. She actually thinks it is hers. Grace gets cross sometimes. And scared sometimes. And many times, she just makes us laugh. Her humor is special. It is unintentional and arises out of just who she is. We love her.

Grace sleeps quite a bit in her recliner during the day. Frequently when she wakes, it is with a start and an exclamation of some kind as she reorients to where she is. Sometimes, it is clear she has been dreaming and is a bit frightened.

A few days ago, we had a small scare. Dave likes to remain at the dining table after lunch for a while and listen and sing along to the music. Sometimes he nods off a bit but will eventually get up and go down the hall to his room for a nap. This particular day he must have been positioning himself to get up by turning sideways in the chair and then nodded off before making the effort of rising. The next thing we knew, he had fallen backwards onto the floor.

Staff checked him out, got him up in his chair, and bandaged a scrape. Dave was sent to his room. Apparently, you are never too old to be sent to your room.

A while later, Grace startled out of her sleep with a “What happened?”

“Well, we’ve just been listening to the music, Grace. And Dave fell out of his chair.” I responded.

“Okay,” said Grace.

I imagine I could have said that the place caught on fire, and we had all evacuated the premises while leaving her behind, and she would have responded the same. She is “okay.” Except when she gets cold, and then she is quite cross. However, if you want someone who can roll with the punches of life, that’s Grace.

For the other “Grace” posts, click here to read “Care Home Humor: Grace,” and click here to read “Grace and the Cat.”

Post navigation

Categories

Categories

Welcome

Welcome to my blog. You will find humor, sadness, regret, guilt, frustration, exasperation, disappointment, and a host of other feelings.
Don't be shy. Let me know you are out there by leaving a response to a post or clicking the 'Contact Me' option from the menu above.
As they say, "A burden shared is a burden lessened."